Coufetery Comms

Batten Disease (also known as Ceroid Neuronal Lipofuscinoses) is a group of rare and fatal genetic conditions affecting the brain and...

Some of you may remember these lovely children from my rare disease awareness campaign in February last year: Amelia and Ollie, brother...

Well, that went too quickly!  The end of the 59th  European Medical Writers Association (EMWA)  conference, this time in Riga.  For me,...

Today is Down Syndrome (DS) Awareness Day. The 21st of the 3rd month symbolises three copies of chromosome 21.  I can't sugarcoat this...

A reminder that the CLN2 Community and The Batten Disease Family Association will be gathering outside the Houses of Parliament on...

It's late in the day, but today has been World Rare Disease Day. I wasn't able to repeat the awareness campaign that I undertook last...

Image: creative comms 💫 PLEASE SHARE WITH YOUR RARE FRIENDS AND COLLEAGUES 💫  The March 2025 issue of the EMWA Medical Writing journal...

💡 This weekend, I have had what one would call a lightbulb moment and a new raison d'être. It isn't anything that hasn't been discussed...

PKU awareness day is observed every year on the 28th of June, aiming to raise awareness of the condition. PKU is a rare genetic disorder...

Today was a good day. I received the live link to a manuscript that I have been project managing. This one was a labour of love,...

To celebrate Batten Disease Awareness Day 2024, we are wearing orange. Our family would like to show support to all families touched by...

In partnership with the Batten Disease Support, Research, & Advocacy Foundation, the Kennedy Krieger Institute are leading a stakeholder...

This day is dedicated to raising awareness of mucopolysaccharidoses (MPS) and related conditions. Image generated by AI using CANVA MPS...

Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is thought to affect between 0.2-0.4% of the UK population....

Raquel Billiones, PhD and myself have been invited to moderate an Expert Discussion Group, at the upcoming European Medical Writers...

The European Medical Writers Association (EMWA) 2024 Spring conference is almost upon us. Raquel Billiones and I will be moderating the...

This is more of a personal post than a professional one, but it is World Down Syndrome Day, and in the spirit of my professional...

Happy Rare Disease Day 2024!!!!! Show your stripes! Following the rare disease initiative we started at the beginning of February, I...

Just in time for Rare Disease Day . The European Haemophilia Consortium team have published another topic in their FREE patient education...

Unfortunately, yesterday was the last day of the rare disease initiative I have been doing with the rare disease community in February....